The Immortal Life of Henrietta Lacks (32 page)

T
he story of Henrietta Lacks eventually caught the attention of a BBC producer in London named Adam Curtis, and in 1996, he began making the documentary about Henrietta that I would later watch in Courtney Speed’s beauty parlor. When Curtis arrived in Baltimore with his assistants and cameras and microphones, Deborah thought everything would change, that she and the rest of the world would learn the true story of Henrietta Lacks and the HeLa cells, and she would finally be able to move on. She started referring to periods in her life as “before London” and “after London.”

Curtis and his crew covered the Lacks family story in more depth than anyone ever had, filling dozens of hours of video interviewing Deborah, prompting her from off camera to speak in complete sentences, and not wander off topic. Deborah said things like “I used to go into a corner after I was married. My husband didn’t even know anything about me, you know, just being sad and crying to myself…. I just ask these questions in my head. …
Why, Lord, did you take my mother when I needed her so much?”

The interviewer asked, “What is cancer?”

The BBC interviewed Deborah in front of the home-house in Clover; they shot Day and Sonny leaning on Henrietta’s mother’s tombstone, talking about what a good cook Henrietta was, and how they never heard anything about the cells until researchers called wanting blood. And they followed the Lacks family to Atlanta for a conference organized in Henrietta’s honor by Roland Pattillo, the scientist who would soon steer me to Deborah.

Pattillo grew up in the thirties, the son of a blacksmith turned railroad worker in a small segregated Louisiana town. He was the first in his family to go to school, and when he learned about Henrietta as a postdoctoral fellow in Gey’s lab, he felt immediately connected to her. He’d wanted to honor her contributions to science ever since. So on October 11, 1996, at Morehouse School of Medicine, he organized the first annual HeLa Cancer Control Symposium. He invited researchers from around the world to present scientific papers on cancer in minorities, and he petitioned the city of Atlanta to name October 11, the date of the conference, Henrietta Lacks Day. The city agreed and gave him an official proclamation from the mayor’s office. He asked Howard Jones to contribute an article recording his memories of diagnosing Henrietta’s tumor. Jones wrote:

Pattillo got Deborah’s phone number through a physician friend at Hopkins and called her. When she heard about his plans for the conference and the official naming of Henrietta Lacks Day, she was ecstatic: finally, a scientist was honoring her mother. Soon the Lacks
family—Day, Sonny, Lawrence, Deborah, Bobbette, Zakariyya, and Deborah’s grandson Davon—piled into an RV that Pattillo rented for them and drove to Atlanta, with the BBC film crew following behind.

At a gas station along the way, Deborah smiled into the camera and explained why they were headed to Morehouse.

“They gonna have a lot of doctors there talking on different subjects and different areas of the science field,” she said. “And they’re gonna hand out plaques to my brother and my father and me in honor of our mother name. So I know it’s gonna be a great occasion.”

And it was. For the first time, the Lackses were treated like celebrities: they stayed in a hotel, people asked for their autographs. But there were a few glitches. In all the excitement leading up to the ceremony, Sonny’s blood pressure shot up dangerously high and he ended up in the hospital, nearly missing the whole event. Zakariyya emptied the minibar in his room, then emptied his father’s and Deborah’s. He yelled and threw programs when he saw that they listed him as “Joseph Lacks” and Henrietta as the woman who’d “donated” the HeLa cells.

Deborah did her best to ignore all that. When she walked onto the stage, she was so nervous the podium shook when she touched it. She’d worried for weeks that there might be a sniper in the audience—a scientist who’d want to take her out to do research on her body, or to keep the family from causing problems. But Pattillo assured her she was safe.

“Excuse me if I mispronouncing a word,” she told everyone at the conference, “but I have problems and I didn’t get the right teaching when I was coming up in school. I was not even allowed to have hearing aid until after I was grown. But I’m not ashamed of it.”

Then, with Pattillo cheering nearby, Deborah cleared her throat and began her speech:

Then, without so much as a pause, she began talking directly to her mother:

It seemed like things were going better for the Lackses, like Henrietta would finally begin getting the recognition Deborah hoped for.

Soon the BBC showed up in Turner Station, asking locals about life there in the forties and fifties. News of their visit, like news of everything else that happens in Turner Station, quickly found its way to Speed’s Grocery, where Courtney Speed learned the story of Henrietta Lacks for the first time. It felt like serendipity—she and several other women had recently founded the Turner Station Heritage Committee, and they were organizing events to bring attention to black people from Turner Station who’d contributed good things to the world: a former congressman who became president of the NAACP, an astronaut, and the man who’d won several Emmy awards as the voice of Sesame Street’s Elmo.

When they learned about Henrietta and HeLa, Speed and a sociologist at Morgan State University named Barbara Wyche went into overdrive. They wrote letters to Congress and the mayor’s office demanding recognition of Henrietta’s contribution to science. They also got in touch with Terry Sharrer, a curator at the Smithsonian National Museum of American History, who invited the Lacks family to a small
event at the museum. There Day admired old farm equipment and insisted that he wanted to see his wife’s cells. (The museum had a flask of HeLa in storage somewhere, the medium as dark as a murky pond, but it wasn’t on display.) People came up to Deborah with tears in their eyes and told her that her mother’s cells had helped them overcome cancer. Deborah was thrilled. After hearing a researcher talk about cloning, Deborah asked Sharrer whether it was possible to take DNA from HeLa cells and put it into one of Deborah’s eggs to bring her mother back to life. Sharrer said no.

After the event, Sharrer wrote a letter to Wyche suggesting that, to commemorate Henrietta, she and Speed consider starting an African-American health museum in Turner Station. The women soon founded the Henrietta Lacks Health History Museum Foundation, Inc., with Speed as president. They planned events featuring Henrietta Lacks look-alikes—a few Turner Station women who’d style their hair like Henrietta’s and wear suits identical to the one she wore in her iconic photo. To raise awareness of Henrietta’s contribution, Speed used her own money to make and give away Henrietta Lacks T-shirts, and someone else made Henrietta Lacks pens. The local papers wrote about their plan for a $7 million museum, and Speed and Wyche opened a Henrietta Lacks Foundation bank account, filed for a tax ID number, and began trying to collect as much money and information as they could for the museum. One of their first goals was getting a life-sized wax Henrietta statue.

Deborah wasn’t appointed as an officer or foundation board member, but Speed and Wyche called occasionally to ask if she’d speak at various celebrations honoring her mother—once under a small tent near Speed’s Grocery, other times at a nearby church. Eventually someone suggested that Deborah donate Henrietta’s Bible and the locks of hair from Henrietta and Elsie that she kept tucked inside. It was for safekeeping, people said, in case Deborah’s house ever caught fire. When Deborah heard that, she ran home and hid her mother’s Bible, telling her husband, “That’s the only things I have from my mother, now they want to take it!”

When she found out that Speed and Wyche had started a foundation and bank account in her mother’s name, Deborah was furious. “The family don’t need no museum, and they definitely don’t need no wax Henrietta,” she said. “If anybody collecting money for anything, it should be Henrietta children collecting money for going to the doctor.”

Deborah only agreed to help with the museum project when it looked like Speed and Wyche might turn up information about her mother. The three of them hung handwritten flyers in Speed’s grocery store and around Turner Station, asking, “Who knew her favorite hymn? Who knew her favorite scripture? Who knew her favorite color? Who knew her favorite game?” The first two questions were Speed’s; the second two came from Deborah.

At one point Speed and Wyche invited Gey’s former assistant, Mary Kubicek, to an event in the basement of the New Shiloh Baptist Church in Turner Station, to talk about how she grew HeLa cells. Mary stood wrapped in scarves on a small platform stage, nervous and going blind, as distant Lacks cousins and locals not related to Henrietta yelled questions from the audience, demanding to know who made money off the cells, and whether Gey had patented them.

“Oh no,” Mary said, shifting from foot to foot. “No, no, no … there was no way to patent cells then.” She told them that in the fifties, no one imagined such a thing might someday be possible. Gey just gave the cells away for free, she said, for the good of science.

People in the room grumbled, and tension grew. One woman stood up and said, “Them cells cured me of my cancer, if I got cells that can help somebody like her cells help me, I say take em!” Another woman said she still believed Gey had patented the cells, then yelled, “I hope in the future this could be rectified!” Deborah just fluttered around the room saying that her mother had cured cancer and everyone should just calm down. Then she asked Mary to tell the story about seeing her mother’s red toenails during the autopsy—the one Deborah had read in Gold’s book. Mary did, and the audience fell silent.

While Speed worked with other Turner Station residents to gather memories of Henrietta, Wyche wrote letter after letter, trying to get recognition for Henrietta and attract donors to pay for the museum. And she got results: the Maryland State Senate sent a resolution on fancy paper, saying, “Be it hereby known to all that The Senate of Mary land offers its sincerest congratulations to Henrietta Lacks.” On June 4, 1997, Representative Robert Ehrlich Jr. spoke before the U.S. House of Representatives, saying, “Mr. Speaker, I rise today to pay tribute to Henrietta Lacks.” He told Congress her story, saying, “Ms. Lacks was not acknowledged as the donor of the cells.” He said it was time for that to change. This, everyone seemed to believe, was where Hopkins should come in.

Wyche had been working on that: she’d written a meticulously detailed three-page, single-spaced letter to William Brody, then president of Johns Hopkins. She called Henrietta an “unsung local heroine,” explaining the importance of the HeLa cells, and quoting a historian saying the HeLa story was “one of the most dramatic and important in the history of research at the Johns Hopkins Medical Institution.” She also wrote this: